26 September 2013

An Open Letter to Congressional Republicans From a Guy With a Gaping Hole In His Side

Hey, Remember that time Congressional Republicans shut down the government for the express purpose of halting Obamacare? Yeah. That was pretty messed up, especially since it was before the whole website debacle, so it's not like they even had that as a talking point; it was just Socialism and Death Panels blah blah blah. As someone who values being healthy but whose body often seems to have other ideas, I was more than a bit pissed.

Dear Congressional Republicans,

Hi there. I'm a guy with a gaping hole in his side--not even slightly kidding about that. You're killing me over here.

Obamacare will literally change my life, improving my lot, along with that of millions of other people like me. And when you threaten to shut down the government in hopes of preventing this life-saving, money-saving program from ever coming to fruition, well, I kinda take that personally.

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Credential Check, or Who The Hell Does This Guy Think He Is?

Don't you dare lecture me about the value of hard work and sacrifice and aspiring to be your best. I know it, I've lived it.

About that hole in my side. I have an ileostomy. Translation: my colon was surgically removed and now I poop into a bag. It's not something I particularly wanted to say here on my blog--or to anyone, anywhere. Hello, I'm Doug, I poop into a bag. What's your name?

But you, Congressional Republicans (and with a special shout-out to Senator Cruz), seem pathologically incapable of understanding that there's a vast world of people and experiences beyond your own. So here you go; here's mine. I’m thirty-two years old, healthy, active, clean-living ... and I poop into a bag. Health care isn't some abstract thing for me. It's a weight that I carry every day--for years, a weight of constant, debilitating pain and anxiety, and now a literal weight, in the form of the poop-bag attached to the hole in my side.

I have the bag because I have Crohn's Disease. I was diagnosed when I was twelve years old. It's an autoimmune disorder for which both cause and cure are unknown. It causes inflammation of the colon, resulting in symptoms such as nausea, fatigue, diarrhea, vomiting, and general severe fucking pain.

I persevered. I'm not one to back down from a challenge. And I happened to be fortunate enough to have fantastic health insurance and, therefore, world-class medical care. Got a college degree (with honors, yo) then worked in a quintessentially manic corporate job. Long hours, contagious stress, never-ending flare-ups; life was an actual shitshow, which made it achingly difficult to find the time and energy to pursue my real dream, to be a writer. The corporate gig was largely about getting health care, a perk that doesn’t come with freelance writing and is something that I absolutely can’t live without.

Cue the montage of hospital stays and struggling just to pretend to have a normal life. One day, my colorectal surgeon finally told me, softly but firmly, It’s time. We need to remove your colon.

Nine months later, healthy for the first time in my adult life, I flew to Europe, amazed and amused that I'd made it here. The next year, I went back. And I wrote about it--the tale of my travels, Europe on Five Wrong Turns a Day, was published last year by Perigee Books/Penguin.

If you want a tale of bootstrapping and perseverance, there it is.

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"Yeah, so? It all worked out for you--quit complaining."

I'm one of the lucky ones. I poop into a bag and life is as good as it gets. Not only am I not dead (yay!) but now, after years of fatigue and frustration, I'm finally able to live. To pursue my dreams--a result of hard work, aspiration, and, yes, the helping hand of health care and health insurance. I desperately needed that assist to allow my own initiative to reach full bloom, my own American Dream to become American Reality.

I write. I travel. Squat toilets are actually easier now. Airport security lines ... not so much, given this bulge. I even got married last month. As I said, I'm so lucky.

But you know what? There are millions of people out there who, through no fault of their own, don't have adequate health care, don't have insurance, and are watching their hopes, dreams, and aspirations wither and even die. I've been in emergency rooms at 3am, waiting in line behind people like the burly carpenter who had fallen off a roof, breaking his shoulder and self-treating with Tylenol and a pillow case sling because he didn't have insurance, but finally trudging down to the ER two weeks later because the pain was just unbearable. Actual true story.

FUN FACT: A 2009 Harvard Medical School study (PDF link) found that nearly 45,000 Americans die every year due to lack of insurance. They’re also way less likely to get proper preventative treatment or care for chronic illnesses.

FUN FACT: People dying because of lack of insurance is empirically NOT ACCEPTABLE.

FUN FACT: The Affordable Care Act wasn't written for you, Congressional Republicans. Not even, as you seem to think, to serve as a sort of piñata for you to bash for personal entertainment. It was written for the millions of Americans who desperately need it, whose lives are--to use a technical term--totally effed by their lack of access to effective, affordable care.

Look. Just because YOU'VE got it good doesn't mean other people do. Good lord, I can't believe I have to spell this out. If the only people you care about are the ones who are already successful, then you’re a pretty horrible excuse for a public servant. The public is more than just the people who look like you, sound like you, live like you, think like you, or have the same privileges and benefits that you do.

"I've got mine, so screw the rest of you" is the very definition of arrogant assholery, which is no way to run a country.

Millions of Americans out there are working their asses off--in some cases, like mine, LITERALLY WORKING THEIR ASSES OFF--and just need a little helping hand to survive and to thrive and to contribute meaningful things to society. To live the American Dream, y'all. Without health care, I'd be a net drain on society; with it, well, I like to think I'm giving something back, and not just in the form of cranky blog posts.

I've got mine. And I think it's only right that other people get the freedom and opportunity to achieve theirs.

That’s what makes me so heartbroken, so angry, so depressed, Congressional Republicans. You're rooting against opportunity, against freedom, against the ideal that hard work should pay off. Against America.

You say: "Gosh, it's too bad that you're sick, but no one's entitled to health care."

Sure. Or clean water. Or corporate tax breaks. But we've got those. And we're all in for roads, even the ones we don't drive on ourselves. Schools, even if we don't have kids. National security, even if we think the defense budget is bloated far beyond need. (Hey, you know what kills more people than terrorism? Cancer. Heart disease. Etc.) We're all in on these things because we value success--we want our society, our team, our family to prosper.

Now, I happen to think that even though we can't save everyone from all the hardships of life, we have a moral imperative to do what we can to help people not suffer untold pain--physical, emotional, financial. If you were walking next to me and tripped and fell, I’d help you up.

You wanna call yourself pro-life, pro-family? Support the already-living and their right to live.

But even if you don't agree with me on that--because empathy is for wimps; because you've got yours, for now, and that's all that matters; because, Ayn Rand, y'all--even if you have no moral qualms about letting people suffer when you could damn well do something about it, you should at the very least understand that healthier people are more productive people. More efficient. Better at turning the gears of capitalism.

You say: "We do think people should have health care! But private industry and charities should take care of that--and they totally would, if government just got out of the way!"

Uh-huh. Wouldn't that be convenient? If we all took care of each other out of the pure goodness of our squeaky-clean hearts? Wouldn't that be effing swell? If all corporations were altruistic and paid living wages and extended full benefits to their workers and never sold shoddy or toxic products, etc. etc.?

In case you hadn’t noticed, that doesn’t happen. It won’t happen, ever, not in any meaningful, across-the-board sort of way. Stop being the naive idealist that you always accuse liberals of being. Seriously. Snap the hell out of it. Get a fucking grip. Pay attention to the real world.

Also, if businesses do offer health care benefits, then they must seem some reason for doing so, right? Like productivity and such? So … if it’s good enough for businesses large and small, isn’t it good enough for the country?

You say: "People shouldn't be forced to pay for something they don't need."

First of all, we're already paying into Medicare and Social Security--it's called investing in our future.

Second and more important, today’s invincibles are tomorrow’s invalids. Unavoidable fact of life, and it happens way sooner than you think--it could literally be tomorrow. Car crashes don’t care if you’re young or old or the most wholesome, healthy person on the planet. Cancer ain’t actually all that picky, either.

And neither are chronic illnesses that give you a gaping hole in your side.

FUN FACT: The thing about health is, one day you have it and then one day--no matter your age or your lifestyle--you don't. Scientific studies have shown that one hundred percent of people get sick, one hundred percent of people get injured, and one hundred percent of people die.

For real, Congressional Republicans, you're rooting against America. You're rooting against personal responsibility by effectively encouraging people not to go to the doctor, not to take care of themselves. And you're rooting against fiscal sanity--because when the uninsured wind up in the ER, as they inevitably will, someone's got to pay the bills.

Ah, right, because HMOs never ever made things rough for patients--miles of paperwork, denying claims for no apparent reason, bullying patients in their hospital rooms, telling them they can't get treatment until they dig out their checkbooks and pay bills that, in fact, they already paid.

Wait. All of that already happens. And that’s why, for example, Accretive is now banned from Minnesota for "deceiving patients, harassing them for money in emergency rooms and mishandling patient data." Corporate bean-counters are already the masters at creating health care mayhem. They’re driven by profits, not by health outcomes. I’m not saying that the Affordable Care Act won’t have some ridiculous regulations and there won’t be stories that you can cherry-pick to argue that it’s a flawed system. All I’m saying is …

FUN FACT: There is no perfect health care system. But Obamacare is way, way better than the Rube Goldberg-meets-Kafka system we have now, promising to be more effective, more efficient, and more inclusive. Egalitarianism, it’s the American way.

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Let's fix the gaping hole in the American Dream.

For me, for the self-interest of my own gaping hole, this is the biggest thing: the preexisting conditions clause is gone.

Right now, I still have a day job (not the one that nearly killed me, a much more sane one). I adore my coworkers, I enjoy the work, I put in the effort. But the honest truth is that I'd rather be writing full-time--lifelong dream, see above. The primary reason I still work in an office is that it's the only way for a guy with a gaping hole in his side to get health insurance.

Until now.

As mentioned, I got married last month. So I have a couple of options when I finally make the jump to full-time freelancing, which I hope to do soon: I can join my wife's plan or I can sign up for MNsure, the Minnesota health insurance exchange program. We've already looked at the costs for each--the full-fledged, bells-and-whistles plans, because that's what I need--and they're pretty much the same.

But if I weren't married, or if my wife didn't have a great job--or if, in the future, she loses her job or decides to go and start her own business--there would still be an option, MNsure. I could still chase my dream of being a full-time writer. That’s a really, really nice thing to know.

And no matter what, once I start to chase my dream (with the opportunity to succeed or fail on my own terms), that will free up my current job for someone else for whom that job is a lifelong dream, someone who is perhaps working at Starbuck's full time--because, again, health insurance--while struggling to get a job in his or her own desired field ... and so on.

Look, Congressional Republicans. You talk a lot about freedom.

Obamacare will give people like me the freedom to succeed, to NOT be stuck in bed or stuck in a placeholder job, but to go out there and manifest our own destiny. Even if I don’t use MNsure or any other exchange, it’s so reassuring to know that they're there. It lets me focus on the business of being me, of taking care of myself and striving to be awesome, knowing that I have options.

FUN FACT: Health care helps us recover when we're knocked down. Health insurance helps us not only when we’re sick but when we’re not. It provides peace of mind, allowing us to take the necessary, calculated risks to better our lot and live life to the fullest--it provides the reassurance that if we do get sick, all will not be lost. Obamacare is not just a safety net--it's also a springboard.

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If a person has a broken leg, you don’t fix the problem by killing him.

If you think Obamacare is imperfect, that’s fine. But then, for the sake of all that is good and holy--for puppies and bald eagles and purple mountains majesty and Mom and apple pie--work to make it better, not to destroy it for good. You and I both know that this is the one and only shot at having universal health care in our lifetimes. So don’t blow it up, make it work. Make. It. Fucking. WORK.

That thing you’re doing right now, to try to defund and destroy it every way you can? You’re not just tossing the baby out with the bathwater, you’re tossing the baby over the cliff while telling its mother that your intentions were good and, anyway, babies are a drag on the economy, and that baby had the preexisting condition of being so conveniently throwable.

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Congressional Republicans. Hear me out. Some topics are too important for pithiness. Finishing up right now.

If I were made of money, like you and your friends are, here's the series of ads I'd run:

We open on REAL LIFE, EVERYDAY AMERICANS describing their situations, looking directly into the camera. No props, no cheesy montages, just straightforward storytelling.

AD 1: BLUE-COLLAR, MIDDLE AGED SOUTHERN WOMAN: I'm a factory worker. I thought I was invincible, until I spun out on my motorcycle ...

AD 2: MIDWESTERN FARMER IN HIS SIXTIES: I'm a farmer, and my wife suddenly started feeling sick, no doctors could diagnose her ...

CASTING NOTE: Hit all the archetypes, all the ages, races, economic statuses, demographics. Get a soccer mom, a fire fighter, an investment banker. Because these stories are everywhere, affecting everyone.

THE STORIES TAKE A TURN, THE TENSION AND HEARTBREAK RISE

I thought I was going to die ...

I thought we would go broke ...

I thought I'd never be able to chase my dream because of my preexisting condition ...

THE MOOD SHIFTS. HERE COMES THE HAPPY ENDING. NOW WE SEE EACH PERSON DOING THEIR THING--THE FARMER IN THE FIELD, THE TRAVEL WRITER TRAVELING, ETC. EACH PERSON CITES A SPECIFIC PIECE OF OBAMACARE THAT HELPED THEM

I'm healing now, thanks to ...

She found a specialist and is getting treatment, and we didn't have to sell the farm, thanks to ...

Life is good. So, so good. Because I have access to health care options, thanks to …

THE MUSIC SOARS. THE MOOD LIFTS. WE’RE ALL IN THIS TOGETHER, MAKING A BETTER SOCIETY, A MORE SECURE, MORE PRODUCTIVE, MORE FUCKING AWESOME NATION. USA! USA! USA!

FADE TO TAG LINE:This American Dream brought to you by the Affordable Care Act.

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Hell yeah it is.

Yours truly,

Doug Mack, a hard-working Midwesterner with a gaping hole in his side.

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NOTE: A few people have asked if it’s okay to share this far
and wide. YES! PLEASE AND THANK YOU. Facebook, Twitter, Friendster, Pony
Express, singing telegrams delivered to Senator Cruz, emails/tweets to your
elected officials or health care writers … All of that. Go for it. I’d be so
grateful. That’s why I wrote this: to share my story and put an actual,
specific face (and gaping hole) on the issue of health care reform.

Thank you for this. I plan on sending this every day to MEMBERS OF MY OWN FAMILY who have a relative (me) who was dropped from their insurance plan after 20 years on on-time payments and very few payouts as too risky when I suddenly needed an intestinal resection (I got off easy) after which, I was deemed "uninsurable." quirky sidebar: at the time of surgery, they tried to deny coverage, because I was essentially too fit and too female to have colon cancer (this, despite having it).

Thanks for writing this Doug. As you almost certainly know, we have publicly funded health care in New Zealand, and although the system has it's flaws I honestly can't imagine life without it. But - as you know very well, and have demonstrated here - it takes personal stories, people willing to reveal their own struggles, to emotionally engage enough people to move an issue as entrenched as this. Thanks for your willingness to be part of that. It's courageous.

Thanks for the kind words, Marianne. Right, there's no such thing as a perfect health care system (alas), but I'm so eager for the day (soon!) when the USA catches up to New Zealand and so many other countries, and has a health care system that looks out for *everyone.*

Thank you! I will be linking to this on FB and sending it out to my family who seem hell bent on voting against their own interests. Health insurance has kept me trapped in my job for over a decade now. The preexisting condition clause has prevented my aunt from getting coverage for years and almost killed her couple times.

Doug, this is BRILLIANT! I laughed, I cried, and my heart swelled in anticipation of the happy ending. I'm sharing this everywhere and keeping my fingers, toes, arms, eyes, etc crossed that Congressional Republicans (and the gaping holes in their brains, hearts, souls, etc) let this dream happen. Thanks again, Doug, for providing me with a speaking platform to help combat The Stupid. Cheers!

Also not to mention that they all have a federal health care plan...it all drives me batty! I find it hard to comprehend the anti-healthcare sentiment that 50% of the population has. Really? How is it that half the country consistently votes against their own health, wealth and well-being for the past 3 decades?!?

Right! F'real. On all counts. The fact that 100% of House and Senate Republicans *have* government health care yet claim that it'll be the End Of The World As We Know It if other people get it ... well, that just makes me want to throw things.

I had a longer post, but it ate it. I am a freelance writer too and our family was just sideswiped by a serious illness. We take care of ourselves. We work hard. The situation our current system puts us in incredibly stressful and ridiculous.A million thanks to you for writing this. I can't right now because the situation I'm in is too new and too private. I'm glad you did. You took the words out of my mouth. I'll be reading.

A somewhat self absorbed article. Great! ACA works for you, a guy with a hole in his side. Doesn't make ACA a good deal across the board. Suspect there will be a lot more people with just the opposite experience as time goes on. Time will tell. Congrats on taking the turn away from the rat race though... and also on getting married.

Um, it's a highly personal essay about a highly personal situation, posted on a personal blog. So, yes, there's a healthy dose of Me. But as I said numerous times, I'm not looking for pity, and I realize I have it far easier than a LOT of people--I was using myself as a case study, one story among millions. And as I also said above, I'm aware that the ACA has myriad flaws. But we that means we should try to fix the flaws, not tank the whole thing.

But thanks for the congrats on getting married and going freelance. I do appreciate it. Cheers.

My first book was Europe on Five Wrong Turns a Day(Perigee Books/Penguin, 2012), a travel memoir about my attempt to tour Europe guided only by a 1963 copy of the guidebook Europe on Five Dollars a Day. This blog has its roots in that trip, and if you dig back to the 2009 archives, you'll find my posts from the road.

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